Figure 1.

The primary process of the Dutch newborn screening program. Expecting parents will receive information about the newborn screening program during the first [1] and second consultation with the midwife [2]. The first information brochure briefly mentions newborn screening, whereas the second brochure elaborates on the objectives, disorders and newborn screening process. During registration of a newborn at city hall, the second information brochure will be handed out as well (3). The screening organisations (5) will be informed about the registration of the newborn at city hall (4), after which screeners will visit the parents at home or in the hospital (6). They will perform the heel prick and send the heel prick card by post to one of the five screening laboratories (7). The heel prick cards are then analysed and the results are registered in the laboratory information system (LIMS) and the national monitoring database Praeventis (8). Abnormal results are forwarded to the general practitioner (GP) (9a) and paediatrician (9b) by the medical advisor. Medical advisors coordinate logistics of the referral procedure. GPs will visit the parents and their newborn (10) and inform them about the referral of their newborn to the paediatrician within the pre-set referral time (11).